ArticleChronic respiratory disease
Idiopathic pulmonary fibrosis: Educational needs of health-care providers, patients, and caregivers.
Article in Chronic respiratory disease. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2020Pooled it
- Nurse-Led Palliative Care Clinical Trial Improves Knowledge and Preparedness in Caregivers of Patients with Idiopathic Pulmonary Fibrosis.Annals of the American Thoracic Society · 2021Trial
- Education needs in oxygen therapy for individuals with interstitial lung disease.BMJ open respiratory research · 2026Article
- Advancing practitioner knowledge in interstitial lung disease: a review of free, online resources.ATS scholar · 2026Review
- Living with pulmonary fibrosis: how affected people experience disease-related information, health services and self-management strategies.BMJ open respiratory research · 2025Article
- Patient education and self-management in interstitial lung disease: why and what, now how?ERJ open research · 2025Article
- Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation, multiphase, mixed-method study.ERJ open research · 2025Article
- Current Landscape and Future Directions of Patient Education in Adults with Interstitial Lung Disease.ATS scholar · 2024Review
- Patient education for individuals with Interstitial Lung Disease: A scoping review.F1000Research · 2024Article
- Variation in information needs of patients with interstitial lung disease and their family caregivers according to long-term oxygen therapy: a descriptive study.BMC pulmonary medicine · 2023Article
- Nintedanib Ameliorates Bleomycin-Induced Pulmonary Fibrosis, Inflammation, Apoptosis, and Oxidative Stress by Modulating PI3K/Akt/mTOR Pathway in Mice.Inflammation · 2023Article
- Pulmonologists' Perspectives on and Access to Palliative Care for Patients With Idiopathic Pulmonary Fibrosis in South Carolina.Palliative medicine reports · 2023Article
- Rare disease education in Europe and beyond: time to act.Orphanet journal of rare diseases · 2022Article
- Advance Care Planning Needs in Idiopathic Pulmonary Fibrosis: A Qualitative Study.The American journal of hospice & palliative care · 2022Article
- Patient-centered Outcomes Research in Interstitial Lung Disease: An Official American Thoracic Society Research Statement.American journal of respiratory and critical care medicine · 2021Article
- Educational aspects of rare and orphan lung diseases.Respiratory research · 2021Review
- Patients' and healthcare professionals' perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study.BMC pulmonary medicine · 2021Article
- Raising awareness on physician-patient communication in IPF: an Italian multicenter study exploring the pulmonologist's perspective.Sarcoidosis, vasculitis, and diffuse lung diseases : official journal of WASOG · 2021Article
- Fellowship Education in Interstitial Lung Disease. A National Survey of Program Directors and Trainees.ATS scholar · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Idiopathic pulmonary fibrosis (IPF) is a progressive disease associated with poor quality of life. Debilitating symptoms and the reality of shortened survival impact patients' physical and emotional well-being and constrain the lives of patients' caregivers. This study assessed the informational needs of medical providers who care for patients with IPF, IPF patients themselves, and their caregivers. Tailored surveys were sent electronically to providers, patients with IPF, and caregivers of patients with IPF collected on a rolling basis in March of 2017. Providers answered questions regarding their own informational needs and what information they believed patients needed. Patients and caregivers identified their own informational needs and the perceived needs for each other. About 2636 surveys were sent to providers, including 2041 to physicians, of whom 156 completed it. One hundred sixty patients and 29 caregivers responded to the survey via a link on a website. Eighty-six percent of providers described themselves as physicians who diagnose and treat IPF patients themselves. Providers ranked information on "making the diagnosis of IPF" as their top informational need. Patients and caregivers chose "disease progression/what to expect" as the most important informational need for themselves and for each other. Providers want to make a correct diagnosis when IPF is in the differential diagnosis. Patients and caregivers desire clarity around how IPF will behave over time and what their futures with IPF will look like. Resources for patients and their caregivers should include information on disease natural history in empathically worded, clear, and easily accessible formats.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.